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SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

64 REPLIES 64
Lulu34
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Doesnt 50% just relate to the number who are diagnosed with node positive disease.... In medical terms these are classed as lymph node metastasis and though its just stage 2 disease its medical terminology relates to the fact that it has speead from the breast to the lymph nodes this is what it says on my path report.

This would account for the abnormally high no of people with "mets" considering the majority of screen deteced csncers are DCIS, grade 1 and 2 and are small and have no need for chemo.

Of symptomatic cancers there are still a very high number of low or moderate grade cancers that in postmenopausal women probably wont need further treatment with chemo as they still node neg.

This is the only thing i can think of that would bump the figures enough to reach 50% when the statistics that we know and use show that only a small proportion especially of the early screen detected canxer will go on to spread further afield..... Around 90% of screen detected cancers are still alive at 5 years and around 45% of cancers are currently screen detected.... This would mean that a huge percentage of symptomatic cancers would develop mets, unless it were positive lymoh nodes.

Would love to read the "research" they are using to quote their figures.
2catlady
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi,Belinda &fecinora,I totally agree with you. It never made sense to me that they didn't know how many people had secondaries . Good god in they day and age they know how many people pass wind!!? Not knoning how many there are of us makes you feel very worthless ,no wonder NICE reject drugs that could help us if they don't know the statistics or do they??!!
belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi fecinora, crazy isn't it? Surely it would take no more than minutes to collect the numbers from each hospital? At least of those living with secondaries.
fecinora
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

'too much pink awareness and not enough reality' - yes indeed.

 

Should this thread be re-titled SCARY LACK OF STATISTICS? How difficult is it to collate the numbers with mets for crying out loud?  No wonder the answer to so many of my questions has been 'there is no evidence....'. There's plenty of evidence, it just hasnt been collected and analysed usefully enough.

 

And how difficult is it to inform us of mets signs and symptoms before we are cheerily discharged from primary treatment and exhorted to go and live our lives because we might fall under a bus?

 

I feel a conspiracy theory coming on......

 

 

beanbob
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I agree with Belinda about the need for more awareness. I was dx with secondaries 10 yrs after primary. I was probably in all that time afraid of recurrence in breast but unaware of the rest. I lived with back pain for 4 months. A locum at GP was dismissive even tho by then I had read the Macmillan site and feared the worst. I have been lucky and I am still playing golf and hiking despite a fractured vertebra taking a further 3 months to find on X-ray.

In the stats I am one of the 85% surviving 10 years. Giving false hope and false perception that everyone lives happily ever after. In fact I am terminal. Those same stats were the thing that blinded me and the GP. More awareness is needed. There is too much pink awareness and not enough reality.
belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Oh Geordie I'm so pleased to read you are NED, I've never been Ned, stable is as good as I get, not knocking stable, it's good. Thank goodness you went for that blood test. One of the comments by a Daily Mail reader mentioned the lady in the article had yellow eyes in one of the pictures and it's true and I missed it completely. It's a fine line, sometimes we who have secondaries can't win as we are told we will frighten or depress.
geordiex
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

hi belinda it was a blood test at my gps surgery that alerted them ,and I only went as I was feeling tired was diagnosed last march with secondaries to liver ,her2 primary in 2009 after taxol and herceptin I am now NED and continue on herceptin indefinately ,my argument with them was had I not gone for a blood test under my own belt how would I have found out and the answer was you would have turned yellow ! so as for now alls good xx

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi geordie, I agree in our case we could, would waste precious time going over what has already happened and we can only go forward and I hope you are well and your treatment's working well. But my thinking was if only GPs and primary patients realised the more realistic stats maybe they would insist on regular check ups and proper investigations after a primary diagnosis. Perhaps presenting with symptoms, like the lady in the Daily Mail did would not have made any difference to the end result, sadly, but if GPs and patients knew the more likely stats they would insist on being taken seriously, not fobbed off. It's not unusual to read here on the forums primary ladies being apologetic for being worried about seeing the Dr because they feel their GP thinks they are hyperchondriacs. It is now too late in this case but perhaps this lady could have had a longer life albeit on treatment. Some quality years too if only she had been taken seriously, listened to. Perhaps GPs need to be better informed.
Mals I'm not sure if the link will work in the private message I sent you so will paste it here too. X
http://www.dailymail.co.uk/health/article-2557824/Our-daughter-alive-GPs-hadnt-failed-diagnosed-canc...
geordiex
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I personally feel enough is enough ,no statistics are ever going to be accurate all you can do is take your treatment look after yourself and live with it ,you don't fight it (meds do that ) you live with it and I for one prefer to put my energies into that rather than worrying about statistics no-one can truly rely on x

Mals970
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi Belinda. Do you have a link to that online daily mail article about the woman with a cough? . I'd like to read it but can't find it despite googling.
Thanks
Mals x
belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I do still believe the 50% stat and if it's not 50% (I think) it's very close. But I think some of the reasons you (may) not know many mets women RoadRunner could be because many of them hide away so as not to frighten those who have been diagnosed but are not stage 4. The stats Angelfalls found even gave the game away themselves, Not for the general public. These were not from some obscure site either. As Mema says we tend to stay here on the Secondary forums so as not to frighten others. When others (not all) post here without realising they have strayed into the secondary forums we have, sometimes, been told ( told off ) not to scare others, stop talking depressing statistics etc.
I know some friends just stopped going to get togethers when they were diagnosed stage 4. A friend who died a few years ago now raised thousands of £s for a Maggie centre by swimming round various isles in Scotland. When the press were ready for the presentation of the cheque a well meaning? Nurse quickly wheeled my friend, Alison, the swimmer who by this time was in a wheelchair, into another room as she would have depressed the other bc patients. Just yesterday there was an article in the online edition of the Daily Mail about a lady who had seen her GP many times troubled by a cough. Even though she had been a bc patient a few years before this the GP took none of this into account. By the time it was investigated the lady was found to have bc elsewhere and she died soon after. All the Pink awareness counts for very little knowledge. A comment left by a reader said something along the lines of ..it's very sad, she might have lived longer but once it had spread the outcome would have been the same...This comment got many thumbs down, red ticks. Her parents and the DM said she had lung cancer and her parents, obviously very upset, thought she could have been saved if the spread had been discovered sooner. Why do even BCC talk of cancer coming back? Unless it's a new primary it was always there. Sorry I have strayed from stats but I was interested by your post and it's one of those things I want to get to the bottom of but don't believe I ever will.
Back to stats. There are a significant number of us diagnosed stage 4 from the beginning and I do think, from being here a while now, recently there have seemed to be more of us reaching year 5 of living with secondaries. Though very sadly there are still many that don't. X
Mema23
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi Roadrunner, I think there are loads of us mets ladies around, there are quite a few of us post on the 'Living with secondary thread', but I know I stay away from the primary threads as I don't want to scare you primary ladies x
RoadRunner
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I am only a primary lady, but these statistics obviously are of huge significance to anyone with a primary diagnosis.  To me what we are being told just doesn't stack up.  There are roughly 45,000 to 50,000 new cases of breast cancer each year, depending on where you look, and  11,000 to 12,000 deaths.  So roughly a quarter compared with new cases.  If half of us go on to get a secondary diagnosis, but only a quarter of us die, the number living with mets must be going up hugely year on year.  I know treatments are getting better, but somewhere on ths thread I have seen a statistic that says the stage 4 five year survival rate is 13%, which doesn't tie in with the above. 

Also, just anecdotally, I know loads who have had breast cancer, but not many who have gone on to have mets. 

Am I missing something here?

Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

As I've said before, it's not the overall statistics applied unhelpfully to individual cases that concern me. Rather it's the effect of using erroneous or misleading statistics to inform fundraising, policy-making, distribution of resources, etc.

So if the NHS states that 50% of those initially presenting with early-stage breast cancer will go on to develop mets, they should be funding accordingly. And the general public should be aware of it, so that a.) people who do get mets after "successful" treatment aren't quite so devastated by the news and b.) we could undo some of the damage done by the pink spin which has led people to believe breast cancer is largely curable.

While I'm posting, here's another link, this time to a peer-reviewed paper using those same 50% stats. Can they really all be wrong?

"Approximately half of all women with breast cancer will develop metastatic disease, although the majority will have a long disease-free interval between treatment for early-stage breast cancer and the development of metastases."
http://www.hta.ac.uk/execsumm/summ1119.htm

Lulu34
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I am fascinated by statistics and frequently use them in my posts to others to try and reassure and give hope.

They wont tell you what will happen to you.... Just what would happen to 100 other individuals the same as you.

When i was first diagnosed at 37 with no apparent family history than my mum having BC At 57 i was informed it didnt dramatically increase my risk..... I was just a statistic.... 1 in 200 women will get bc by the time they are 40.

3 years later i have TNBC age 40..... Only about 5 in every hundred will get bilateral cancer unless they carry a mutation .

Oh lo and behold im a brca2 carrier.... 1 in 400 in the general population are mutation carriers.

2 years later i have a recurrence in my interpectoral lymph nodes... Chances of getting recurrent BC there 1 in 1000.

I know these stats arent related to mets specifically, however the way i look at it is..... It could be a 1 in 2 chance or a 1 in a Million chance..... If your the 1.... Its still 100% of you.

I still love stats and figures.... I know they things are changing all the time as people live longer, treatments improve, people are becoming more proactive in keeping well.

The good thing is there is no zero% and no 100%. So we hopefully have as good a chance as any of beating the odds.


lxxxx
Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

www.breastcancercare.org.uk/upload/pdf/statistics_briefing_final_0.pdf

See pages 6 & 7. BCC have used those same stats I gave in my original and subsequent posts, albeit with an advisory note as to their accuracy.

Mals970
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi Belinda,
It's totally understandable to look to statistics for answers and although I'm not in your situation I've done the same. When my sister was diagnosed I went online to check the survival rates and then again when my mum was diagnosed. We first discovered mum had BC when they discovered secondaries on her colon. Apparently the statistical chance if that happening is about 1 in 1700 and when I called BCC the very kind and compassionate nurse told me she had never heard of another person with secondaries on the colon. How did that make me feel? Like my mum had been singled out. I then thrashed about trying to work out statistically how long I had left with her and a friend sent me that quote which grounded me. When alls said and done a statistic is just that and frustratingly doesn't give us the answers we so desperately want. Oh and yes I also know statistically how likely I am to get BC with a mum, sister, maternal aunt and two second cousins. I'm sure I would be studying all statistics going if I'm diagnosed but I hope the quote has given you some hope. Take care
Mals x
belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Thank you for your posting Mals. I was part of a large group of women, there were around 40 of us at one point, all with stage 4 and we used to meet up regularly. Now after 2 very recent deaths there are only 2 of us left. I have felt I must be about to drop off the edge of the cliff even though, at the moment, my secondaries are stable. I will remember your post when I next find myself obsessing over stats. X
Mals970
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I read this quote which I wanted to share with you all.
If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell.
belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Thinking of my group all stage 4 with many like me stage 4 from diagnosis the 1 in 10 is way off. And not in a good way either. I think that mirrors those using the forum too?
Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

And big (((((hugs))))) to you too, Helen! Hope you're feeling better after a good old rant!! 😉 Happy weekend! xx

2catlady
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi,angelfalls,yikes, rather scary for us Stage 4 and/or ER+ but let's hope there's something new around the corner that NICE don't scupper as they deem us not worth saving as it costs too much!
I always wonder when I hear them refusing another drug if any of their wives,daughters,mothers,sisters,friends have BC. If the NHS is short of money start charging the time wasters and weekend drunks who fill up ER and waste money. Oh I'm having a right rant day today .
Not at you angelfalls,you get a huge hug xxx
Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Further detail from Cancer Research UK:

"Outlook by stage

Survival statistics are available for each stage of breast cancer in one area of England. These figures are for women diagnosed in the early 1990's and the outlook is better for women diagnosed now due to improvements in screening and treatment. The statistics are likely to be similar in the rest of the UK.

For stage 1 breast cancers more than 90% of women lived for more than 5 years and more than 85% of women lived for more than 10 years.

For stage 2 breast cancers more than 70% of women lived for more than 5 years and more than 60% of women lived for more than 10 years.

Around 50% of women with stage 3 tumours lived for more than 5 years and 40% lived for more than 10 years.

In about 1 in 20 women (5%), the cancer has already spread to another part of their body when they are first diagnosed. Sadly, the outlook once a cancer has spread to another body organ is not so good. It is not curable at this point, but may be controlled with treatment for some years. Women with stage 4 tumours have a 5 year survival rate of around 13%. About 1 in 10 women (10%) will live for more than 10 years."

http://www.cancerresearchuk.org/cancer-help/type/breast-cancer/treatment/statistics-and-outlook-for-...

The figures given are age-standardised relative survival, so wouldn't that take into account women dying from something else?

The following gives recurrence figures for another localised study which began in the late 90s:

http://www.theguardian.com/society/2012/jun/12/breast-cancer-recurrence-study-macmillan

The positive news is that all these figures would have been pre-Herceptin, so you would expect survival rates to have improved among HER-2+ women. But other than this, I wonder whether there has really been much change for those diagnosed at Stage 3 and 4. Let's hope so!

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi Penny, yes a good point. I have a good oncologist but I found myself dithering in my response to 'do you still work?'
Penny47
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Thank you Anna!

 

Mals- I am sure the fact that I am working past retirement age has affected the perception of professionals about my treatment.  Almost an argument in favour of not retiring!  Almost I say.  If it was up to me I'd have retired years ago!

Anna_BCC
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi Angelfalls,

 

Emma Pennery, our Clinical Director has sent me this further information which I hope may help answer some of the points you have raised.

 

We don’t have reliable figures about the percentage of people with secondaries at diagnosis or the percentage of people who go on to develop mets. This is because until last year, no national data was collected on the incidence of advanced breast cancer. As a result of our campaign, it’s now mandatory for data on all new diagnoses of recurrent and secondary breast to be collected in England, but it will take time for this data to be collated and analysed.

 

There are some estimates, but these are from incomplete regional (local) data only, and derive from people treated in the mid 1990’s, so they have to be taken as best guesses, rather than definitive figures. They indicate about 5% of women and men diagnosed with breast cancer had metastases at the time of their primary diagnosis. The data also suggest between 20 and 35% of all those with a primary diagnosis went on to develop metastases in the 10 years following diagnosis.

 

With the figures you cite, such as 90% of people survive 5 years, you cannot assume that the remaining 10% died of breast cancer. The figures only show the percentage of people still alive five years after they were diagnosed. They do not indicate cause of death. Some people surviving five years will be free of disease, some will already have recurrent or secondary disease, but the data doesn’t tell us how many fall in each group.

 

But survival and mortality figures don’t apply to individuals because they don’t take into account the type and stage of breast cancer. Each person’s risk may be much higher or lower than national figures for breast cancer outcomes.   

 

Best wishes

Anna

Forum Coordinator

Mals970
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Just wanted to say thanks to Belinda for reading my post and to angel falls for her lovely reply. You will have to excuse me if I don't agree with comments on this thread which state that people over 70 get equal treatment. Age discrimination is rife within the Nhs and I've seen it with my own eyes with my own mother. She wasn't too weak to fight it but was by the time anyone listened to her. I'm pleased if others have had a good experience but please don't assume that this means the NHS operates like that for everyone.
Mals 970
belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I'm more confused than ever.
cornishgirl
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

WOW so many different figures, it would be nice if everyone would sing from the same hymn sheet!! no wonder people get confused,

I would like to know how they can predict an individuals survival rate ,when 2 exact same cancers,that look the same , as in size, stage, grade,hormone status etc, but are not the same, as they can express different gene molecules, i.e. a subtype (they have found 10 different subtypes so far) but at present all the tests ONLY use the standard, characteristics of a tumor to decide on treatments?, i.e. adjuvant online etc, the reason likely why all cancers don't respond the same is due to these different subtypes , i.e., why some recurr ,some don't ,whatever the stage , unfortunatly at present I do think it is a bit of a crap shot, at the moment it is a one size fits all in treatment decisions, but clearly it doesn't fit all  !! 

 

 So personaly i am not that comforted by the present stats given, as stats cant tell us what will happen to us personaly , breast cancer is not one disease, it is many, roll on the future of personalised cancer treatments.

 

But that is probably another debate!! 

 

L x Smiley Frustrated

 

 

 

 

 

Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

The following report by Macmillan gives a breakdown of five year survival rates by Stage at diagnosis, which gives us a bit more insight (the relevant info is on page 28 of the report):

http://www.macmillan.org.uk/Documents/AboutUs/Research/Richpictures/Richpicture-peoplelivingwithbrea...

Stage 1 - 90%

Stage 2 - 70%

Stage 3 - 50%

Stage 4 - 13%

So, does this mean that 10% of Stage 1 patients die of BC in the first 5 years, 30% of Stage 2, and so on? If so, that would mean that the percentage of people with mets in each group within five years is higher than that, as they'll be living with secondaries but not dead yet... Or do I really not understand statistics?!!!

Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

*Like* 😉

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I'm relieved you are still confused Angelfalls, hee I thought it was my chemo brain. X
Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

So, 55,000 people diagnosed each year and 12,000 deaths, but we are still largely in the dark as to a) the percentage of people with secondaries at diagnosis and b) the percentage of people who go on to develop mets. And that's what I started this thread about... I understand that these can only be estimates because of the lack of vital data collection, but does BCC have any figures for these two groups?

Anna_BCC
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Dear All

It is, as many of you have said, really healthy to have open debates and discussions especially when the subject may be perceived as a difficult or challenging one.  There are so many statistics and figures mentioned here on this thread and that has made it difficult to respond as they all appear to be coming from different sources, a bit like comparing apples and oranges!

 

Because this is less than straightforward our Clinical Director has written a blog http://www.breastcancercare.org.uk/news/blog/understanding-breast-cancer-statistics to try and address the questions and comments that have been raised.

 

It was felt that by responding to this thread via a blog we can also share this information with others who may also be having the same questions, not restricting it to forum users only,

Best wishes

Anna

Forum Coordinator

Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I agree that statistics are pretty meaningless in terms of individual response to treatment, risk of the cancer returning, spreading and so on. However, statistics are used to inform so many important decisions which affect us and our treatment that I think it's vital the statistics quoted are accurate for the sake of fundraising, policy-making, distribution of resources, etc.

So far this week, we've seen:

1) the BBC stating that survival rates for BC are currently at 84%, which sounds a lot like 84% of BC is curable. The truth, of course, is that 84% of people are still alive after 5 years, regardless of whether or not they will eventually die of their BC; and

2) people with pancreatic cancer wishing they had BC because the public perception is that it is an "easy" cancer with a high chance of getting cured...

Watered-down, misrepresented stats and the focus on "good news" BC stories are doing us all a massive injustice.

Emperortooco
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

My mum was diagnosed with bc at the age of 89 and secondaries some 3 months later in pelvis and several ribs. I can,t knock the NHS and her onco for the treatment that she has received and is still receiving at 94 years old . I tend not to read too much into stats as they are not 100% accurate and are a snapshot at a given time. It,s good to debate though !

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi Macie, it's good to hear you are having excellent treatment. X
Macie40
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi again I would just like you to know that I am coming up for 74 and have had BC since 2007 with secondary's dx in 2012 and would like you all to know that I have had marvellous treatment all the way through and continue to do so. The reason I asked the question below was because of a post from one of the other ladies who said that her onco told her that the treatment she was having would be a different matter if she was over 70 and it just planted a seed in my head after reading an article also in the paper about treatment for bc in the over 70's x x x

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

That's ok I just wasn't sure if you knew Kevin.
Ah L everything Angelfalls said, it's just feeling this is the one place out of all the other forums where we should be able to discuss the darker stuff, more than it being exclusive to only stage 4, it's not. X
Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Thanks for your sensible, realistic and well-informed post, CornishGirl. Please don't ever think you're not welcome to post on secondary threads! It's really not a case of "us and them", rather the distinction between those who want the facts and those who are happy to believe the fiction and that has nothing to do with the stage you may currently be... I hope you will always be a primary lady, but if not, you will certainly be well-prepared for whatever may lie ahead. xx

kevinj
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Sorry no i didn't i will leave you alone my sincere apologies if i have written anything to upset anyone

Mema23
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I agree Cornishgirl, I learned so much from this forum when I was first diagnosed with secondaries last year. Yes, some of it is scary, it's very scary that I will more than likely die before I am old enough to collect my pension.
But, I have found the information I have learned from other ladies with metastatic breast cancer has been invaluable. Different treatments available,standards of care and even disparities between England, Scotland and Wales' drugs fund has been eye opening and I thank you all for your input and also support xx
cornishgirl
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Oh how i miss the debates on BCC , even if scarey at times i agree that cans of worms sometimes still need to be opened, i think we need to be able to talk openly about all these isues ,and not brush them under the carpet for fear of upsetting anyone, the only way to fully learn about this disease is by education, and i think the forums in my expierence thankfully have always played a part in that , all to often breast cancer is talked about way too lightly , I get astounded for instance at the nunber of new ladies i come across thinking of refusing treatments on the forums , the general publics view of breast cancer is that BC is completely cureable and nobody dies of this disease these days, this is perpetualted by the media and also sometimes charitys who only want to put across the good news stories and leave out some of the harsh realities of the disease, because well quite frankly it is all to frightening , The fact is lving with cancer is frightening , i dont think it helps anyone to not be able to talk openly about all the issues that surround their disease, because these are the issues that matter , there was a time that noone talked about cancer, it was hushed up ,people were isolated and left to get on with it, im so glad that we have come a long way from that now, because if we dont talk about the uncomfortable issues nothing will ever change , people need to get angry sometimes to bring about change and also to bring about change of attitudes,

Forums are hard, in my expierence they have always been a double edged sword , and im sure all of us at some point have read stuff that maybe we wish we hadnt , that doesnt mean that the serious issues should ever be avioded , we all are responsible at the end of the day for what we choose to read ,even if sometimes scarey.

Thats my view anyway , but at the moment im still a primary lady ,and maybe i shouldnt even be commenting on this thread.
L x

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I think the charities tend to go for the jolly side. Look how long we have waited for a Secondary day! I've just read a heartfelt post by Mals970 on Events Campaigns and Meet ups. Her dear Mum's experience of the NHS mirrors my Mum's. She had ovarian cancer at 74.
I don't think you need to apologise for can openings Angel (if I had smileys I would add them at this point) your post title could not have been plainer. X
Angelfalls
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I don't think anybody here is questioning the amazing job the NHS do with the limited resources available to them, or how lucky we are to have such a system in this country. Although, of course, we all pay NI contributions, so it isn't quite "free".

I suppose my thinking was that if so many people really do go on to develop mets, even after being treated for early BC, that perhaps those figures could and should be used by the BC charities to push for better and more widespread specialist care (I still don't have a BC nurse...), a fairer portion of research funding and a better understanding of metastatic cancer.

On the flip side, if the NHS are exaggerating the numbers of secondary diagnoses, why are they doing so? Could it be to overestimate the cost of treatment for mets, so that NICE can more easily justify their rejection of the latest drugs on the NHS? Just a thought!

belinda
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Kevin did you realise this part of the forums are for those of us who are stage 4?


kevinj
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

As i said in my post,I have sadly had to use the NHS a lot in the last month,one thing that always strikes me whatever hospital i am in is the thought, that nobody here has had to pay a penny for their treatment whilst in this hospital,that always makes me very proud of our country and the NHS

geordiex
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I take no notice of statistics as they'll always be out of date anyway ,everyones individual and treatments change all the time ,wether or not you have metastatic disease or not to me your still a survivor xxx

2catlady
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

Hi, angelfalls,no problem xxx sometimes cans of worms need to be opened xxx
Swanie,like you,I'm starting to take statistics with a pinch of salt. What will be will be. But ,hopefully my coin lands on the many years side.We have a great NHS ,a fellow crafter like me in the USA is struggling to pay her medical bills for BC. Thank god that's not a problem we have.
Huge hugs to you all and many ,many more years of debates ,Helen xxx
swanie
Member

Re: SCARY STATISTICS Re: Numbers of Metastatic Diagnoses

I am afraid I take a very simplistic view of statistics - you will either be lucky or not.  There is no real way of telling what side of the coin you come up with.  As said earlier  a number of low risk people end up dying and a number people with a very poor prognosis live for years.  Researchers are still working on finding out ways of predicitng how disease will progress - hence the current trend of overtreatment on initial diagnosis in some cases.  I also believe that researchers are working their socks off to come up with better and more effective treatments for this disease - they can do no more.

Like the gentleman said I am enormously grateful to the NHS epsecially having an American aquaintance who had to borrow nearly $60,000 dollars to pay for treatment due to small print on their health insurance.  

At the risk of causing offence I think it can be stressful and counterproductive to get bogged down in statistics which are possibly out of date or have a very definite bias or are poorly collected and analysed.  Take a look out of interest if you need to but don't dwell or tie yourself up in knots is my attitude.

 

On wards and upwards - Jacqui  (bone and lung mets)